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Dr. Bob is Robert Hsiung, MD,
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Posted by redscarlet on February 2, 2006, at 23:27:20
In reply to Re: Topomax » redscarlet, posted by Storm Rider on February 2, 2006, at 18:17:10
Thanks Rainy & Storm Rider / Kat, for your reply... :-)
I really hope my pdoc goes for the change from Zonegran to Topamax and if so I'll be sure to go slow on the dosing.
I'll let you know what he does next Thursday.
Have a Good Night and Thanks again... :-)
Posted by stresser on February 4, 2006, at 12:04:27
In reply to Re: Topomax, posted by redscarlet on February 2, 2006, at 23:27:20
I just found some time to read the posts, and am sorry it has takem me this long to respond.
My daughter noticed the hair loss was the greatest at 400mg per day. She now takes 300mg, (I take the same), and there may be some hair loss, but it could be the amount she would normally lose anyway. It is NOTHING, like before. In fact; I think, it could be possible that her body is becoming used to it and the side effectof the hair falling out is lessening even more with the 300mg. Relax about it, because I think I got myself more worried than I needed to be. (For sure) -L
Posted by redscarlet on February 4, 2006, at 18:59:37
In reply to Re: Topomax » redscarlet, posted by stresser on February 4, 2006, at 12:04:27
> I just found some time to read the posts, and am sorry it has takem me this long to respond.
>
> My daughter noticed the hair loss was the greatest at 400mg per day. She now takes 300mg, (I take the same), and there may be some hair loss, but it could be the amount she would normally lose anyway. It is NOTHING, like before. In fact; I think, it could be possible that her body is becoming used to it and the side effectof the hair falling out is lessening even more with the 300mg. Relax about it, because I think I got myself more worried than I needed to be. (For sure) -L
Thank you L .... :-)I've been thinking about going on the Topamax or not all day.
I loose some hair on the Zonegran (more then normal) and just fear the Topamax will be worse (it was in the past).
I just can't make up my mind but it was good to get your reply and I'm so happy for your daughter (and you... :-) )
I guess I'm just going to talk to my pdoc about it on Thursday.
I'll let you all know what happens.
Have a GOOD Night and Thanks again... :-)
Posted by Storm Rider on February 4, 2006, at 20:30:56
In reply to Re: Topomax » stresser, posted by redscarlet on February 4, 2006, at 18:59:37
Relax about it, because I think I got myself more worried than I needed to be. (For sure) -L
> Thank you L .... :-)
>
> I've been thinking about going on the Topamax or not all day.
> I loose some hair on the Zonegran (more then normal) and just fear the Topamax will be worse (it was in the past).
>I am presently taking 300 mg twice a day and working up to 400 mg twice a day; in the past I have been on 400 mg twice a day...
there has been no hair loss other than the normal hair loss one would espect...
you know, the hair that comes out in the brush normally each day... that sort of thing...I have an acquaintance who is on no medication whatever and refuses to consider medication for any reason... she could be dying of pain and would not take an aspirin, you know the type?
She loses so much hair on a daily basis that I expect her to be bald by the end of any given week. It is nothing unusual to go to her house and see the bath tub drain full of hair after her morning shower and the basin full of hair after she has styled her hair in the morning...
not sure what HER problem is... I am the one using the med that has the supposed hair-loss factor...
I keep suggesting that she should check into it...As has been said by Rainy and Stresser, follow the slow titration and listen to your body for the timetable and you will be all right...
it is the fast track that causes the problems with hair loss and vision and the rest of it...we want everything yesterday in this society...
take it slowly and carefully and wait for results...
good luck
kat
Posted by redscarlet on February 4, 2006, at 23:02:38
In reply to Re: Topomax » redscarlet, posted by Storm Rider on February 4, 2006, at 20:30:56
Thanks Storm Rider / Kat
It's so great to get all this positive support.
I know I'm being a little too nervous about the whole thing, it's just I've had so many bad side effects from so many meds in the past that I'm just being too cautious....OK chicken !!!! But I promise to settle down, besides, it's not my first time at the rodeo !Take care and I'll be in touch with what happens at the pdocs on Thursday.
Have a Good Night & Thanks again... :-)
Posted by fierycelt on February 6, 2006, at 0:26:26
In reply to Re: Topomax and redheads... » fierycelt, posted by storm rider on February 1, 2006, at 15:01:51
I think your "moniker" should be "circus juggler" not "storm rider"...lol. I certainly admire you, I hope someday to be as self-assured as you. Something to strive for!! This may sound strange, I wish you lived in my neighbourhood, you would be my favourite person to have my afternoon tea with...or trade books with...
I was raised to never give a thought to other peoples "disabilities"...actually my mother always taught me that, like myself & my ADDHD, it was what made them uniquely them...and I was to respect what the universe had "set in place". I have always assumed other people are like this, but deep down inside I realize they are not.
I'm sorry your mother did that to you. I suppose she thought she was doing the right thing for you, but maybe it was the right thing for her!! The "embarressment" of having a less than perfect child...such a shame. I hope you have made peace with this and her. I hope I have not offended you!! ...a personal question? Did it bother your husband when he found out?Like I mentioned before, working in a strip club isn't all bad, they are certainly very tolerate of "differences", unlike corporate America. Maybe because we are such "outcasts" based on what we do for a living. I would much rather "fly under the radar" and be an "outcast" in societies eyes, than be subjected to the close scrutiny and judgement by corporate America. I think it is better to be different than the same. I just can't see myself as a "sheep". We certainly all look out for each other...
One of the D.J's and one of the dancers has epilepsy. When this particular dancer goes on stage, certain lights aren't used. No muss, no fuss...no memos or seeing the corporate doctor. We all know what to look for in each one of these individuals when they may be having a seizure coming on! Once, this dancer had a seizure on stage!! The DJ shut the music off, had every dancer(30) come on stage & stand in a big circle around her, to watch her & made every customer stand up and turn their back to the stage..."gentlemen have some respect"!!! The GM called the ambulance and when it was over one of the bouncers & the GM went to the hospital with her. The owner paid for her hospital visit. And we are all "Losers"?????!!!!! HHHMMMM....
You are so right, people are unbelievably insensitive. They think they are being sensitive or PC, but infact they are making the situation worse. I experience it everyday. It is nothing for someone to remark about another being upset/angry as being "BiPolar". They say the word BP like they have bad taste in their mouth. I'm not sure why society thinks being upset/angry is a sure sign of BP...oh, it is one of many...but not a sure sign. Did you "gently educate" that cameraman? Hope so...
Are your moccasins uncomfortable? Sometimes mine "pinch" a lot...give me blisters.Boredom...when I am bored I get into mischief...not really... but my husband (yup I'm married)(he's a sweetie) says I become willful and stubborn...a handful. But it is just who I am he says. He is very patient/calm, a by-product of being Southern, thank goodness...However, he goes to school full time, works full time, tries to support both of us financially since I'm not making money and keep track of me. Alot of stress, he seems unflappable, but I am afraid he will cave in eventually. It's not fair to him. But...he says he married me not because I was perfect, but because I was perfect for him...he knew life would always be interesting with me, after all dating me was!! Fortunately he never tries to "fix" me or anything I do...he has seen me at my absolute worst and has never told me what "I need to do". He has always told me it is up to me what I feel I need to do. I am not suggesting he thinks I am not sick, but he realizes I am the only one who can take control of my health. He just helps...reminds me about things...now it is eating, taking vitamins and doing yoga. I never doubt for a minute I am luckier than most...
I loved the... "I have been through so many incarnations that I have met myself coming in the door as I was going out..." I will try and remember that...a reminder that with the restless mind sometimes "history" repeats itself and not to get alarmed or discouraged...fabulous!!!!
There was a movie with Bette Midler and Lily Tomlin about twins switched at birth...a great line from the movie... "if you stand here long enough, you see yourself come out"...what you said made me think of it...aaahhh another random ADDHD reference. Life is grand!!!
So-o I, impatient as always, increased my Topamax by 25mg (now 50mg) 5 days earlier than you suggested...I hope this wasn't one of my less than better ideas...will let you know.
I'm ok being the "Village Idiot" (I will still be smarter than Mr. Bush,LOL) but I don't want to lose my hair. I am going to research vitamin suppliments, to hopefully, prevent this.Warm Regards,
Suzy
Posted by Dr. Bob on February 6, 2006, at 20:36:46
In reply to Re: Topomax and redheads..., posted by fierycelt on February 6, 2006, at 0:26:26
> I think your "moniker" should be "circus juggler" not "storm rider"...
Sorry to interrupt, but I'd like to keep this thread about Topomax and redirect more social interaction to another board here, Psycho-Babble Social. Here's a link:
http://www.dr-bob.org/babble/social/20060203/msgs/607023.html
Also, information about babblemail is at:
http://www.dr-bob.org/babble/faq.html#babblemail
Thanks,
Bob
Posted by stresser on February 6, 2006, at 21:26:30
In reply to Re: Topomax and redheads..., posted by fierycelt on February 6, 2006, at 0:26:26
I loved your post! People are very quick to judge other people with BP, that is... if they are not aware of exactly what BP really is.
Impatient? I think I drove Kat and Rainy crazy about one year ago with the Topomax dosage. Hang in there! My daughters doctor increased her dosage (when we found the right pdoc) by 100mg 300-400 at once. No side effects other than the hair coming out, and that would have happened anyway at the higher dosage. Keep us posted with your interesting stories, and remember...you aren't the only one. -L
Posted by fierycelt on February 6, 2006, at 21:47:30
In reply to Re: Topomax and redheads... » fierycelt, posted by stresser on February 6, 2006, at 21:26:30
thank you "stressor" I feel lucky knowing people like you, Rainy & Kat aka Storm Rider are out there...I shouldn't be going beyond a dosage of 100mg. I hope your daughter hasn't lost too much hair...it's hard enough being a kid.
I will be switching to the "social page" for my "stories"...Dr. Bob has imparted reason into my ADDHD brain...Thank you Dr. Bob *smile*...Topamax page for Topamax stuff and Social page for social stuff...got it!!! Sorry... be patient with the ADDHD BP. We try hard, but you know we can get distracted!!!
Posted by Aleese on February 10, 2006, at 0:22:07
In reply to Re: topomax, posted by Ellen Brodie on May 12, 1999, at 19:08:30
I was wondering if anyone has experienced loss of appetite with the Topamax and or wieghtloss and if so how many millegrams do you take???
Posted by Aleese on February 10, 2006, at 0:28:43
In reply to Re: topomax, posted by Aleese on February 10, 2006, at 0:22:07
I already posted but i wanted to change my subject.
Does anyone know if there us definate wieghtloss with Topamax and or lowered appetite? if so how many mgs is it suppose to be before it works that way?
Posted by Aleese on February 10, 2006, at 0:31:28
In reply to Re: topamax » fierycelt, posted by stresser on January 29, 2006, at 20:31:10
> Well...so far so good, anyway! My diagnosis was new this time last year, so therefore; I have only been on topomax for one year. I think this is the board for you, because it doesn't matter why you take it. Many of us take it for BP, and many others for other things, but we're all experiencing the same effects from the same medication. You don't have to "ride the storm out anymore". -L
> Have you lost wieght on it?
Posted by redscarlet on February 10, 2006, at 14:08:53
In reply to Re: topamax, posted by Aleese on February 10, 2006, at 0:31:28
Well here's the update from my pdoc appointment yesterday...
After talking to my doctor about how the Zonegran was effecting me ( adding depression & hair loss ) we decided to stop the Zonegran and NOT start the Topamax because we both felt I would NOT have a positive reaction to it and to just stay with the Abilify for my bipolar.
I really do think I would have the same reaction as I did to it the first time I took Topamax. I was tired all the time, my hair loss was MASSIVE and I seemed irritable on it. So I think I will follow my gut feeling and also my pdoc's advice and stay away from it, I feel OK with that at this time.
Best of health to you all and have a good after noon... :-)
Posted by storm rider on February 12, 2006, at 11:47:02
In reply to topomaxwieghtloss, posted by Aleese on February 10, 2006, at 0:28:43
> I already posted but i wanted to change my subject.
> Does anyone know if there us definate wieghtloss with Topamax and or lowered appetite? if so how many mgs is it suppose to be before it works that way?Topomax definitely led to weight loss and suppressed appetite in my case... within a few days of starting to use it I noticed a decrease in weight and the appetite suppression kicked in within the first few days as well...
it definitely shorted out the circuits in my system that caused me to want junk foods and led to a decreased in interest in larger meals and in snacking...
kat
Posted by JaclinHyde on February 12, 2006, at 18:05:49
In reply to topamax - name change, posted by Storm Rider on January 29, 2006, at 21:11:55
I call this drug the "Food? What the hell is that?" drug :-) It is also the 'can't-seem-to-string-two-words-together' drug. I swear this drug turned my mind into mush when it came to making a sentence. And I'm a writer! Loved the weightloss though.
Posted by Aleese on February 12, 2006, at 19:26:11
In reply to Re: topamax - name change, posted by JaclinHyde on February 12, 2006, at 18:05:49
I was on it for about 2 weeks but had to stop due to lack of money to pay for it-it is soo expensive but I noticed I wanted to do NOTHING I was like a zombie. I never really got to notice the weightloss or lowered appetite because I wasn't on it long enough!! I plan on getting back on it but I wanted to ask about occasional alcohol use...is that harmful with the Topamax???
Posted by Karla on February 13, 2006, at 21:22:21
In reply to Re: topomax, posted by Aleese on February 10, 2006, at 0:22:07
I was up to 900mg and it didn't have any weight loss effect on me. But my motabolism is different than yours. My dr said at 200mg is where you may start to see your weight effected.
Posted by Aleese on February 14, 2006, at 11:46:56
In reply to Re: topomax, posted by Karla on February 13, 2006, at 21:22:21
Karla-did you need to loose though?? maybe you didn't and thats why???
Posted by Storm Rider on February 14, 2006, at 13:15:17
In reply to Re: topamax - name change, posted by JaclinHyde on February 12, 2006, at 18:05:49
> I call this drug the "Food? What the hell is that?" drug :-) It is also the 'can't-seem-to-string-two-words-together' drug. I swear this drug turned my mind into mush when it came to making a sentence. And I'm a writer! Loved the weightloss though.
I work as a writer too... in news and broadcast as well as free lance... and have not had any real problems other than the usual where did that word go syndrome that I have always had...
but it is vital, I repeat VITAL, to go slowly on Topomax...
too often people are started on too high a dose and increased too quickly....almost all the time actually....
I was so fortunate to be involved with a doctor who was involved with the original studies of the med as it affected weight loss... he is the one who linked it to weight loss... he was assessing its effect on epileptics and discovered the use for weight loss and did studies
as well as another neuro who uses it extensively for headache treatment...
and was guided well from the start...of course the guy who did the studies is now involved in studying the form of epilepsy I have...
and as a lab rat, I have to admit that I am not all that excited at the testing phases...
happy that someone else was a guinea pig for topomax but not willing to let them experiment on me for someone else's benefit...nasty, aren't I???
meanwhile, take the topomax dosage slowly and titre up slowly and it should not be as devastating...
also the mind jumble seems to wear off after a few weeks according to those I have talked withkat
Posted by Storm Rider on February 14, 2006, at 13:26:38
In reply to Topamax Alcohol, posted by Aleese on February 12, 2006, at 19:26:11
> I was on it for about 2 weeks but had to stop due to lack of money to pay for it-it is soo expensive but I noticed I wanted to do NOTHING I was like a zombie. I never really got to notice the weightloss or lowered appetite because I wasn't on it long enough!! I plan on getting back on it but I wanted to ask about occasional alcohol use...is that harmful with the Topamax???
My sister-in-law was prescribed topomax to deal with spasms in her back...she broke it dramatically a few years ago and has rods and wires and baler twine holding her together so she can walk... some crazy glue too as well as prescription for morphine to cope with the pain...
she tried the topomax and found it controlled the spasm attacks that went with her pain but was told that alcohol was not an option...
no one warned me about it, but then I am not inclined to really like the stuff anyway...
one day she arrived at the door with about four months' supply of topomax... she didn't think doing without a few drinks now and again was worth the relief from spasms...
she had been with friends a couple of nights before and had three or four beers... for her, an alcoholic actually, that was a quiet evening...
the next day she thought she was dying...
the effect of the topomax with the beer...
that was the end of topomax for her..
she had no other side effects...The one time I forgot her warning we were out for dinner to celebrate an anniversary or something and I had a glass of wine, a very light wine as I really do not like wine at all, and liqueur after dinner... the next morning I was sure that I was in the beginning of statis epilepticus...
and anyone who has experienced statis will know how I felt...so my advice would be not to mix the two...
unless one wants to feel really rotten afterwards...it gives the term hangover a whole new meaning !!!
kat...
Posted by Aleese on February 14, 2006, at 13:45:08
In reply to Re: Topamax Alcohol » Aleese, posted by Storm Rider on February 14, 2006, at 13:26:38
Thank You Kat for all your words of wisdom!! My Dr. really should have told me all this so I am glad I found this site!!
Happy Valentines Day!
Posted by bridgey1128 on February 14, 2006, at 14:29:33
In reply to Re: Topamax Alcohol, posted by Aleese on February 14, 2006, at 13:45:42
Hi Kat! I am back on 100mg but really for losing the weight I gained back. I gained 30lbs back that I had lost after starting it. It has done nothing for my BP this go round. I have noticed a definite decrease in my appetite in a higher dosage whereas I didn't last time. Apparently it DID whether or not I noticed since I lost 30lbs. I am doing Anything Goes this year and I wanted to lose some..it's not working as fast..ugh. I have not noticed any problems mixing it with alcohol but it's usually because I only have one or two mixed drinks and food with that and take the meds a couple hours later. Anyway, I am here. :) Hope you all have a great Valentine's Day!
Posted by Storm Rider on February 14, 2006, at 21:38:57
In reply to Re: topomax, posted by Karla on February 13, 2006, at 21:22:21
> I was up to 900mg and it didn't have any weight loss effect on me. But my motabolism is different than yours. My dr said at 200mg is where you may start to see your weight effected.
I don't know about the 200 mg... I began to notice the weight change within a week of starting the topomax...
it was only a little but it was a real jump start to my attitude and self esteem after having come to terms with the weight gain... I had always been extremely slender... all right, thin :(
my husband always told people he married me out of pity because someone had to feed me <g>
When we married I was the same 5'6" I am now and weighed under 100 pounds...
suddenly thanks to the meds I was on to help me deal with the emotional roller coaster I was on because of the change in the epilepsy, I weighed double and I was not pleased...when the neurologist told me that there was a second side effect to the topomax, it caused weight loss, I said I would have to think about it..
and five seconds later said I would try it LOL
anything to eliminate the migraines and control the seizures that were escalating (tegritol on its own was not doing the job and his initial response was to increase the dosage to some grotesque amount until I mentioned the migraines... never thought I would be grateful for blinding headaches!!!!)The topomax had a definite effect on appetite in my case, almost from the start...
I wonder if it is a mental thing? Because the doctor said it would affect weight, I expected it to cause me to lose weight therefore it did???At any rate, I am now strongly addicted to protein, chicken and salmon, and salads... I don't eat grains at all as I have discovered an allergy to them and am a lot healthier since that...
Today's jean and skirt size is a three...
and the doctors, the orthopaedist and gp, are worried about my weight...
seems to me we have been here and done that at the other extreme...
the words anoraexia are being bandied about again... sounds like my twenties all over again...
but it is just a matter of not wanting to eat the heavy meals and the junk stuff...
sort of a mental conditioning...
I am no longer able to eat large meals and no longer want the junky foods... but protein foods call my name...
I'll swear I hear them <GGG>I tried to diet and follow the nutritionist's regimens but it didn't work, the weight would come off for a while then pile right back as I found myself back at the refrigerator or snack food counter...
it hasn't happened -- yet...I have been told by the mri techs who worked on the study with the one neurologist that if I stop taking the topomax the weight will come back...
that is certainly a worry of sorts, although the bigger worry would be the return of the constant seizures...and that is not an option... since my last stay in hospital we finally have the day time nonsense stopped and the clock returned to its normal patterns of nighttime seizures...
for that matter, I have not had a seizure in ten days...
I feel as though I have wond a gold medal at the Olympics!!!
At the moment I am on 600 mg of topomax.. half in the morning and half in the evening....and for the person who was on 900....
apparently the literature available indicates it is safe up to 1600 mg a day but only therapeutic up to 800 mg a day...makes one wonder why it would be prescribed at doses over 800 mg doesn't it...
One of the doctors in ER was doing some research on it the last time I was in and told me that when he increased my dosage to 300 in the morning...
he also told me he thought I should go right from 200 to 300...
when I was stable enough to argue, I explained why that was not a good idea...
figured it might help someone else down the road...
and besides, I cannot pass up a chance to argue... it meant I was feeling much better <s>kat
Posted by Storm Rider on February 14, 2006, at 21:47:50
In reply to Re: Topamax Alcohol, posted by bridgey1128 on February 14, 2006, at 14:29:33
> Hi Kat! I am back on 100mg but really for losing the weight I gained back. I gained 30lbs back that I had lost after starting it. It has done nothing for my BP this go round. I have noticed a definite decrease in my appetite in a higher dosage whereas I didn't last time. Apparently it DID whether or not I noticed since I lost 30lbs.
Hi Bridgey!It will take longer to work the second time around... or so the techs told me...
I had to go off it for one of those wretched intensive tele whatsis tests ... and they warned me that the weight would come back and fast and would be slower to start coming off again...
I had visions of ballooning from 130 to 3000 pounds in a couple of weeks the way the one tech spoke...
but I gained ten pounds and managed to lose it again in a month or so...
It is frustrating though to work your way through the weight thing and have it come back...
self esteem and weight are so intertwined, especially for women and then there is the physical health issue...
when the BP or ADD or other emotional/mental health issues are added into the equation, life becomes extremely complicated.
Sometimes I think there should be a magic formula or button...
I keep asking my doctor why in an age when we have seen men walk on the moon and cars that can travel twice the speed limit and then some, he doesn't have an instant fix for what ails me...
For a couple of years I was seeing a psychologist to help me adjust to the intensified warfare that my brain was escalating with this epilepsy lark. He didn't have a quick fix either...
That annoyed me...
If I break a leg, the doctor puts a cast on it so it can heal. With an emotional problem, the psychologist tells me that I have to find my own solutions, so we talk about it...
I suppose it made sense, but it frustrated the blazes out of me..
I wanted it fixed and I wanted it fixed right then.
And wrapped up in pretty paper with bows on it...same with these weight issues and ADD....
I often wonder how other people manage to sit and watch a movie ...
I cannot go to the theatre to see a movie. I have to wait until it comes out in video...
cannot imagine sitting still that long...
LOL
kat
Posted by Aleese on February 15, 2006, at 13:45:17
In reply to Re: topomax » Karla, posted by Storm Rider on February 14, 2006, at 21:38:57
I will only be on 100mgs I hope that has an effect on my wieght since its such a low dose.
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